In tears! Please someone help. Do I have celiacs?

[LUCKYSTAR]

To the people of the celiac universe.
I know this is long but Please someone help me.
 
I am feeling very hopeless and I'm just throwing all my issues out there in hopes someone could possibly tell me if my symptoms resembles Celiacs.
 
Brief history -
 
* major ocd started around 3 (pulling out hair, obsessive hand washing, fear of germs)
as I got older - the ocd got worse (don't recall a traumatic experience)
*chicken skin - ever since I was a child - on arms legs and face (still have it til this day)
*major anxiety all my life
*poor circulation all my life
*bruise easily all my life
*sleeping problems majority of my life
* gallstones at age 16 - gallbladder removed
*appendicitis at age 21
* always constipated growing up
* developed an eating disorder at 16 to 26. I am now currently 27 and have been symptom free for a little over a whole year. I was a hardcore anorexic and then I would go right into full blown bulimic (back and forth for a decade) gaining and losing about 100 lbs each every time.
* I've always had tingling in my hands and feet. Went to Drs and no one ever figured it out.
* Always had edema (non pitting) in my legs
* Every time I get blood work done my liver enzymes are always elevated and I have no idea why.
* I've never abused diuretics but I have used water pills (back then) - lasix etc
* I've taken up bodybuilding to help me live a healthy lifestyle and it seems to me now that I am eating more consistently and being good to myself major problems are surfacing.
 
Daily I eat clean food ( a lot of veggies, lean proteins, yams, fruits - I eat every 2-3 hrs - 6 meals a day- the only thing I'm eating on a day to day basis with gluten is rolled oats and ff salad dressing. I take vitamins and digestive enzymes. I work out daily. I get enough fiber.
 
Once a week I have a treat meal and treat dessert (which obviously has gluten and dairy in them) I only have dairy also once a wk on my treat meal and dessert. just an ex: burger, fries and dessert cake and ice cream (all in moderation)
 
For the past 21 WEEKS I have been in hell. I've been through blood work - thryoid is okay and ultrasounds( they only saw gas in my stomach) and my Dr. (who is an idiot) could not find anything BLAMED IT ON my eating disorder when honestly I have been in recovery and have not relapsed and have been living moderately and healthy. He also told me it was from depression and I really doubt that it could make my stomach extended and all my other issues that I've been having.
 
These are my symptoms currently:
*distended hard hollow stomach EVERY DAY. I can see my ribs on the side but I seriously look pregnant. It is painful and it rarely goes away.
*It's a tearing pulsating feeling inside.
*Bulging veins behind calves and near pelvis area
*Loud foul smelling gas.
*I am not constipated NOR have diarrhea. I go once or twice every morning. My stools are very large long tubular and extremely bulky and from what I can see my veggies are not being digested. Looks like it could break apart very easily.
*Bright yellow urine (even though I drink a gallon to a gallon and half everyday)
*Headaches
*Nausea
*Anxiety
*Sadness
*Extreme fatigue
*Dizziness
*Never really had my period. I maybe get it like once or twice a year and it's just spotting.
*The second I put anything with gluten in my mouth I turn fire engine red. My face starts burning and it feels like a pins and needles feeling. To the point where my face feels paralyzed. Tingling in my eyes too. My chest also turns pinkish.
*My face gets puffy and I feel drugged almost.
* I break out in hives every week - the hives are on my chest, stomach, back, and but. They feel hot and sometimes they itch but they are not the ones that celiacs are shown to have.
*When my stomach does go down which is VERY RARE. i measured my stomach before going out to eat my treat meal and dessert. the next morning I measured my stomach again and it had expanded 6 inches!
*I have edema on my ankles and legs chest and arms - everyday.
 
I have tested negative for celiacs (blood- wise). My liver enzymes were once again elevated like always. I have an apptment with the GI may 14th. I'm very scared. I'm irritated. In tears on a daily basis. I feel hopeless. It's really triggering my eating disorder. I am seriously hanging on by a thread. I'm trying to win my pro card in bodybuilding and it's killing my dreams. Everyone wants to put me on antidepressants (and I've taken everything under the sun before and I'm not really for them) I can assure you this is NOT mental.
 
Oh and I even tried eating clean for 4 wks straight w/ no treat meals or desserts and still every single day my stomach is hard and painfully fully extened 5-7 inches.
 
Can you develop celiac's after a hardcore eating disorder or maybe I've always had this and never realized? Do I sound like I have it? Can anyone relate or give me some advice? I'm falling apart.
 
If you can't reply through this. my email address it Tiaramaterial@aol.com
 
Thank you all for taking the time out to read this.
 
Heather

 
 
 

[the sensible celiac]

Hi Heather,

You are certainly having rough times right now, I'm almost certain things will get better for you because you seem highly motivated to take good care of yourself.

First, I'm not a doctor I'm a web designer/webmaster, I am not qualified to offer you medical advice.  Please discuss anything I might say with a medical professional before acting on it.

Having said that I'll add that a few of the symptoms you mention are possibly consistent with celiac disease, but most of them are not typical of CD.  In particular undigested food and foul smelling gas are often associated with celiac disease.  It is also true that symptoms vary very widely from one person to another affected by celiac disease.

Your description of the severe reactions you get to gluten sounds like classic symptoms of a food allergy.  Sometimes people who do have celiac disease also develop food allergies, but they are not at all the same thing.

I think you would be very well advised to go on a permanent, total gluten free diet because you have identified it as a source of trouble for you.  Your appointment with the GI specialist is not far off, so I should mention that going on a gluten free diet *before* you are tested can lead to false negative results because your body may have stopped producing antibodies  and/or damaging your villi in the absence of gluten.  In your case it seems your problems are very much long term, so your body is likely to take longer to heal. 

Just until you identify the cause(s) of your digestive problems it might be wise to make few changes, but it would be a very good idea for you to start a journal and record in it absolutely everything you eat, when you eat it, and also document every time you feel poorly or suffer digestive symptoms with the time of these events too.  Either you or your doctor may be able to identify a pattern.

You mentioned that you have been eating gluten free but then occasionally having a meal or a day when you do consume gluten.  If you actually do have celiac disease this is probably the worst thing you could do.  Once a person with celiac disease stops eating gluten they begin to have more and more severe reactions to any accidental or intentional gluten in their diet.  While a person with celiac disease remains unaware of the issue and they eat foods containing gluten pretty much every day the body has a way of adapting to the problem, and although damage is being done their perceived reaction is slim to none at all.

But once a person with celiac disease removes gluten from their diet the body stops attacking itself, gradually sometimes, and they reach a sort of plateau where the body has stopped trying to accommodate a harmful substance in the diet.  Then, whether on purpose or by accident, if they are exposed to gluten again the reaction tends to be much more severe.

So my suggestion is to wait until you see this GI and discuss with her or him the idea that you should either go completely gluten free or make no effort to avoid gluten.  See if they agree with what I've said.

The ultimate test for celiac disease is a microscopic examination of a tissue sample obtained from the small intestine during an endoscopy.  If the villi are observed to be missing, flattened, or stunted then a diagnosis of celiac disease is likely. Blood tests for specific antibodies created by people with celiac disease can sometimes confirm the diagnosis but these blood tests are not nearly as reliable as a biopsy of the small intestine.  If I were you I'd ask my doctor to perform an endoscopy and get a sample from the beginning of the small intestine.  Then you can know for sure if you do have celiac disease.

What I would advise you not to do is to continue staying off the gluten for days at a time, then having more of it.